Madeline and her family have been supported by the charity Genetic Disorders UK, which is dedicated to improving the quality of life for people and families affected by genetic disorders.
Click above to watch ITV News Anglia's Jonathan Wills interviewing Laura Pattison from the charity.
More top news
A 54-year-old man has died and another has been taken to hospital after a group of swimmers got caught up in a riptide at a Norfolk beach.
It will be a dry and warm night with some clear spells and light winds. Lows of 15 deg C (59 deg F).
Two men who tried to abduct an RAF serviceman in Norfolk may have been part of a larger team, it has been revealed.